The CIS Orphan Consortium has joined Rare Diseases International.

The CIS Orphan Disease Consortium has become a member of Rare Diseases International (RDI) —a global alliance representing the interests of patients with rare diseases and their families worldwide.


This is an important step for our community, expanding opportunities for international collaboration and allowing the voice of the CIS orphan community to be heard on global platforms.


Rare Diseases International unites national and regional alliances of patient organizations, as well as international associations for individual rare diseases. RDI's mission is to be a strong, unified voice for people living with rare diseases, to advance the recognition of orphan diseases as a global public health priority, and to strengthen the capacity of its members through collaboration, knowledge sharing, and joint action.


In recent years, RDI has played a significant role in advancing the cause of rare diseases internationally. In particular:

• In 2021, the first UN General Assembly resolution dedicated to people living with rare diseases was adopted;
• In May 2025, the World Health Assembly adopted resolution WHA78.11, which enshrined rare diseases as a global priority and tasked the World Health Organization (WHO) with developing a 10-year global action plan.

The entry of the CIS Orphan Consortium into RDI opens up new opportunities for:

• representing the interests of patients in the region on the international agenda;
• exchanging experiences with partners from different countries;
• participating in the development of global approaches to diagnostics, patient routing, care organization, and access to therapy for rare diseases.

Source: Rare Diseases International, official release